Organ transplant group rejects changes to rules

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The national organization that manages organ transplants rejected making emergency rule changes on Monday for children younger than 12 who are waiting on lungs but developed a special appeal and review system to hear such cases.

The executive committee of the Organ Procurement and Transplantation Network held a teleconference to consider children who seek to qualify for adult lungs, and many members voiced serious ethical and medical concerns about a recent federal judge's ruling that questioned the existing system.

The meeting was prompted by the cases of 10-year-old Sarah Murnaghan and 11-year-old Javier Acosta, two terminally ill children who are waiting for transplants at Children's Hospital of Philadelphia. Last week, federal Judge Michael Baylson ruled that they should be eligible for adult lungs after Health and Human Services Secretary Kathleen Sebelius declined to intervene in such cases. Both children have end-stage cystic fibrosis.

One expert on transplant ethics said the network is trying to acknowledge the concerns Baylson raised but also issue a warning.

“I think what they're trying to tell the judge is ‘We have a system. It's working. Let us decide, not you,” said Dr. Arthur Caplan, a bioethicist at New York University Langone Medical Center.

He said the judge's ruling “did hit a moral nerve” because the network recognizes the need to examine the claim that the 12-year-old distinction for lung transplants is arbitrary, but OPTN tried to “preserve the integrity of the system by not changing the rule” based on court intervention.

The Murnaghans' attorney, Steve Harvey, called the vote a “positive development” and said it creates “a little appeals process” for all young people in similar lung transplant cases. Harvey said Sarah's case may go back before the new OPTN appeal process, but he said they plan to ask Sebelius to keep Sarah eligible for adult lungs, as the judge instructed, until such a review is over.

The family has said that Sarah may only have a few weeks to live and that no suitable lungs have been found for her, even with the emergency exemption.

Committee member Alexandra Glazier said during the call that while she can't comment on specific transplant cases, judicial intervention is “not an appropriate approach” to managing organ donation.

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